Invisible illness, invisible benefits

I have had ME for just over 10 years now. My ME is somewhat variable. I have had cycles of months of being quite well, with perhaps 80% of my health, and months of being so ill that I barely left my bed. As you can imagine, this has made it quite difficult for me to hold down a job and so I have often had to rely on Incapacity Benefit and Disability Living Allowance.

Unfortunately, those two benefits are even less reliable than my health. The first time I needed incapacity benefit was while I had been working part time in a mobile phone shop. I went off sick again and became so ill that I spent 95% of my time in bed. I immediately received Statutory Sick Pay. (SSP) All well and good so far. Then I reached six months of being ill and SSP ran out. I had to apply for incapacity benefit.

The biggest problem that I had at that time was the application form. I recall it being large, somewhere around fifty pages. I remember trying to write on it but experiencing immense pain when I did so. I enlisted my wife to do the actual writing which solved that problem. Then I waited. And waited. My wife was working at the time, but we both had student loans, overdrafts and credit cards. Already under severe financial strain from my loss of income, the delay in receiving incapacity benefit was the final straw. I was forced to file for bankruptcy, and I took my wife with me. I still feel horrible guilt about that today. After the bankruptcy we moved in to a flat that we shared with a friend I knew from university. Unable to leave the flat most of the time, I spent all of my good hours in chasing my benefit. Phone calls, letters, advisors that knew nothing, that could give me no reason, that promised to chase it up but never called back. Eventually after months I was told that my incapacity benefit had been approved. I received a backdated payment, months worth of income! Of course it was too late to be any help in buying food or paying rent while we were struggling to pay and going bankrupt.

After the struggle for incapacity benefit, my basic living income, was complete, I turned my sights on Disability Living Allowance. (DLA) I knew this one was going to be difficult. The criteria for receiving DLA were not set with variable and invisible illnesses like mine. Although my daily life, care needs and mobility were as severely affected as people with visible physical problems, the problem lay in convincing the decision makers of that fact.

And so I commenced on applying for DLA. The form made the previous incapacity benefit form look like a walk in the park. It was HUGE. It was terrifying. It asked questions about everything, and I mean everything, about my illness. The minutest details of how I get myself food, take medicine and go to the toilet were all needed. Doctors reports were needed. It took me two months to summon the energy to get through it all. The form was just the beginning though. After I submitted it there was silence. After a little chasing up they eventually informed me that I must have a medical assessment. (Why, I don’t know. Obviously the GPs that write reports for them are not to be trusted.) The date of the medical examination was set for a few weeks away, at 8:30 in the morning which was just about the time that I would have managed to fall asleep after a night of insomnia.

The day of the examination came and the doctor arrived. He immediately took a condescending tone and a harsh manner with me, even as I was struggling to open the door and let him in. A bad start. Then it got worse. The questions came thick and fast. Everything covered in the application form was asked again. Already tired, this was bewildering and literally painful to go through. It couldn’t get any worse than this, could it? Yes. Yes it could. Questioning over and with me barely able to move after the onslaught, I was ordered to stand. “Raise your arms” I was told. I struggled to comply, pain washing through my body. “Lift your left leg.” I collapsed, dizzy, in pain, no energy, but the impossible orders continued. After some time, an amount that I cannot remember because of the extreme exhaustion, he told me he was finished and he left.

Then there was the chasing. As before, it took all of my “good” time to try to find out what was going on. No communications came through. Eventually, months after my application, I received the terrifying brown envelope. REFUSED. And the appeal process started. More forms. Letters explaining why I needed help. More silence. My memory of this period is hazy now, I think there was another rejection and another appeal form before my case was sent to a tribunal.

On the day of the tribunal my wife took the day off work and we were given a lift there by a friend. I remember sitting across the table from four stern looking people. They all had copies of my appeal forms, my medical notes. The sham of a medical assessment report. These people knew more about my medical history than anyone else. They asked me questions for an hour until I was visibly wilting, and then they sent us back to the waiting room. Finally I was called back in and informed that I would receive lower rate care. Success! Sort of. I had applied hoping for care and mobility allowances, but in the end I received a mere £16.05 per week. All of that HELL for sixteen quid a week. The only consolation was that they owed me that backdated for nearly two years!

All the while my attempts to claim DLA were going on, I was also still dealing with the Job Centre in relation to my incapacity benefit. Not content with simply allowing me to receive it and focus on recovery, I was required to attend an interview with a disability advisor every few weeks. Every meeting was the same. The advisor was friendly and we would have a good chat. We would bemoan the fact that I was required to attend these meetings even though the travel would set my health back and would need a week of recovery. We would look at what jobs I could do and conclude that no employer would take me with such an unpredictable ability to work. He would suggest an internet business since I had occasionally sold things on eBay. I would promise to look into it if I had the energy, and then I would return home to spend a week in bed.

I did start to recover to some extent. I managed to leave the house more often. I would have many good hours, but I remained largely unemployable because I could just not say which hours of the week I might be able to work. Then one day I received another terrifying brown envelope. I would be required to attend a medical examination to continue receiving incapacity benefit. An assessment at home was not an option, and I was told that I must visit them or lose my benefit. I won’t go into detail of the assessment here, but I will say it was not as bad as the previous one. I went in visibly wobbly and using a walking stick. The interviewer was not harsh but was not friendly either. I went home in a hopeful state. Silly me. A short time afterwards I was informed that I had been found fit to work. No account was taken of my unpredictable and variable symptoms.

I managed to find a job through pure chance. My friend that we shared a flat with had received a better job offer and he gave his boss a glowing reference for my computing abilities. I attended an interview where I was brutally honest about my illness and the possiblities. By amazing good fortune, I got on really well with the interviewer and we were good friends by the time I left the interview, and so I started a job as IT technician at a timber company.

Things didn’t go to badly at first. I managed to get there on time every day. (Well, 5 minutes late because of train timing, but that was allowed for.) I got through most working days and my boss was sympathetic when I turned the lights out to work or took rests in the office during the day. Outside of work, I was wrecked. All my energy had gone on the job and there was none left for home life. I spent much of my evenings and weekends in bed, whimpering in pain, if I even had the energy for that.

After a year my boss took a new job and I was promoted and hired my replacement technician. I liked that. My manager had had such an easy job compared to me! It wasn’t enough though. I started to get flaky, to miss work. I carried on working as much as I could. The operations director was also a good friend by that time and he worked things out so that I could do my job in the hours that suited me. Other staff and directors had noticed my flakiness and he defended me from them. He pointed out that I was good at what I did, that I achieved in 16 to 20 hours a week what other staff had sometimes not even finished. I lasted a few more months but eventually the crunch point came and I went off sick for a full two months. I still helped out where I could by answering emails and text messages. Around about that time I had to re-apply for DLA. I was sent a new form. They wanted everything from scratch! I just couldn’t face it again. I gave up, ignored the form and my DLA stopped. When I resumed work it was on the basis of 16 hours a week done from home or office. I was grateful that they didn’t fire me, but then they could not find any replacement that they would trust with their IT.

In August 2009 I resigned from that job following signs of imminent failure of the company and a rather stupid takeover attempt by the managing directors wife. It had got rather political and I felt personally attacked when the operations director was blamed for all sorts of things. For a long time my father had jokingly been saying to me that if I started an IT company then he would work for me. I resigned, moved back to my parents home town and together with my father started a business to repair computers. With both of us being disabled, we intended to build up the company and then hire more people so that we could both do only 20 hours a week. We received minimal help from the government but together we have built that company up and today we are starting to get regular repeat customers. Unfortunately business is not yet high enough to actually take any wages out of the business but that could be close.

Unfortunately I must end this story on a low point. In November I had flu, and again in December. Combined with too much activity over Christmas that has left me in a complete relapse and more ill than I have been since 2003. Customers are coming in but I cannot deal with them and my father is struggling to cope with it all. Yesterday was a better day, so I am hopeful that I will not be completely stuck in bed for more than a couple of weeks and then can get back to work.

If that doesn’t happen, I am stuffed. I will give up. There is absolutely no point in me applying for Employment Support Allowance, the replacement for incapacity benefit, and definitely no point in applying for DLA. I wouldn’t get it, even while unable to leave my bed at all, and the application process would hurt me. Another medical assessment would set my recovery back for months. Disabled people were treated badly enough by the previous government, the actions of this one in cutting benefits and making the criteria even stricter are despicable.

11 thoughts on “Invisible illness, invisible benefits”

this is why I’ve always said I#d never trade with you. You go through as much hell as me, somtimes more, but mine can be seen on scans and x-rays, I don’t have to fight the medical establishment like you*HUG*. Kudos for not giving up and working with your dad though I really do hope you manage to rest enough to get back on the horse soon dude
take care mate
Dean

It should be pointed out that your Father (irrefutably physically disabled) was made redundant nearly two years before you started the company and had only 6 months work during that time, at such a low wage that JSA would have left him better off. The threat to DLA is worrying; If he loses the motability car he will not be able to work at all, even if anyone would consider employing a 56 year-old disabled dyslexic.

Hi Steve, I’ve found your blog through twitter and have been tweeting on #ombh am about half way through your blog and am wanting to continue, as a fellow M.E suffer I just thought I should let you know that I’m finding it difficult to read, the background format is strobing and the white on black is making it difficult to get though (but that just might be me)!

I actually have this theme as the white text on dark background is so much easier for me. I was thinking only yesterday that I need to add a button to toggle a plain background and hi-vis colour scheme to aid accessibity. I highly recommend Readability as a tool to help you calm down this and any other web page.